Thank you for Dr. Hain feedback

I just wanted to thank everyone for the feedback on Dr. Hain. I made an appt to see him in a few weeks. I will need to fly to Chicago which I’m dreading. It’s not the airplane ride which is hard, it is just navigating through the airport being as dizzy as I am. I’ve done it several times since being ill, and I was just so sad and frustrated in the airport. IT always bothers me that something that used to be so effortless (i.e., walking) is now the hardest and most frustrating experience of my life. But, I will do it. Coincidentally, my husband will be in Chicago at that time due to medical boards that he is taking, so I will meet him there. I hope that it is worth the trip. From the positive feedback that I have gotten, it sounds like it will be. Regardless, just the thought of seeing another doctor gives me some hope for the time being.

That is great news! Although I have done the phone consultation, I think you are wise to go in person. I wish that I had gone in person but I avoid flying at all costs due to a very bad experience a few years ago and the 11+ hour drive was daunting at the time. Good luck and please let us know what he says. Ben

Great Lisa! Looking forward to hearing what he has to say. Hain must be so busy! I wonder how many people he sees with MAV? I’d love to know the statistics and also know who gets better. Maybe you can ask him if you have time.

Best … Scott 8)

Dear Lisa -

I live in Nashville and flew to Chicago to see Dr. Hain. I spent most of my time with Dr. Cherchi and Dr. Hain came in for about 15 minutes of my one hour and 16 minute meeting with Dr. Cherchi. I just want to let everyone know that Dr. Cherchi is AMAZING as well. I have never had a doctor so willing to correspond by both phone and email. Those two docs work as a great team and I recommend Dr. Cherchi as much as I would Hain. I had the most incredible experience meeting them and can say I have NEVER meet two doctors with such true dedication and availability. After 11 months of seeing one doc after the other, paying for the flight to go and see them was the wisest thing I could have done.

Best to you -

Molly

Scott- I will ask him about stats. Good point. And if anyone thinks of any other questions just pass it on.

Molly - that is great! thanks. how are you doing? what meds did they put you on?

Hey Lisa -

Currently I am only taking Paxil from which I was actually seen a lot of improvement with my MAV symptoms. This is not what Dr. Hain and Cherchi recommended but I am taking this to deal with the horrible anxiety I got from fear of MAV (Actually I’ve had genrealized anxiety my whole life worsened by this condition). I saw them in August and they recommended Topamax first. I only tried it twice and didn’t like how it made me feel . I have a bad habit of not trying things long enough to see if they work. Anyway, the next thing they recommended Effexor, but I decided I wanted to treat this naturally. So I found something on line that I followed and during that process, went of my 15mg of Prozac that I took daily because that was what was recommended by this program. At any rate, I had a really bad anxiety crash in January and had to concentrate on fixing that first. I tried Effexor for one week during that crash and I was already so revved that I really can’t tell you what it did to me. My doctor was wanting me back on Prozac stablize, then he moved me to Paxil which has been great after making it through the initial side effects. However, one side effect that hasn’t gone away is constipation. Nice huh? So I’ll see my psychiatrist tomorrow to see what is next. Verapamil is what I am going to take next, but with constipation being one of the main side effects, I can’t take it on top of Paxil.

Nance, who is on this forum and also a patient of Dr. Hain, is on Verapamil and is well again. You might want to PM her with questions. She’s great and can share more about her visit with Dr. Hain. She didn’t meet with Dr. Cherchi.

Hope this helps. I’m still seeking a regiment that will work for me, but I am incredibly hopeful.

Best to you and may we all find something to helps us deal with this crazy thing!

Molly

I did want to add one more time how much I loved Dr. Cherchi. I thought I was going to meet with Hain but I met with Cherchi and couldn’t have been happier!

Molly - thank you for your reply. I wanted to let you know that I have been horribly constipated from Verapamil. I am on a very high dose. After trying tons of stuff, I finally found something that works - Miralax. IT does not make me sick, and is the only thing that has worked thus far. I was glad to find it. now I just have to get rid of the MAV. I’ll let you know how the appt goes.

Hey Lisa - Thanks for the info as I had just sent you a PM asking you about constipation and V. That makes me nervous about V.